AANEM Foundation News Express

Holly’s Journey: From Guillain-Barré Syndrome to Happily Ever After

11/16/2018

In 2011, Holly Gerlach was 26-years-old and had just given birth to a beautiful baby girl, Casey. Just a few weeks after Casey was born, Holly began experiencing numbness and tingling in her finger. That same day, she began feeling weak, had a hard time lifting her legs, and experienced severe pain in her neck.

“Then, when I stood to feed my daughter in the middle of the night, I collapsed to the floor,” explained Holly. “I ended up going to the ER thinking it was a pinched nerve.”

The ER doctor called for a neurologist and the symptoms were recognized by the neurologist right away. He immediately suspected Guillain-Barré Syndrome (GBS).

“I didn’t get a confirmed diagnosis until the spinal tap came back about 12 hours later. But after only a few hours in the hospital, they were certain it was GBS. My case came on very fast and severe and I was completely paralyzed in the ICU after 72 hours. That was helpful in diagnosing me,” Holly said.

When the doctors told Holly she had GBS, her initial thought was “Whatever this was – because I had never heard of GBS before – it would be mild and I would get through it. I was naïve. I had no idea what was about to come.”

“When you have GBS, your own body attacks the peripheral nervous system, paralyzing your body. I often describe GBS as a cousin to multiple sclerosis, except that it’s a one-time attack and you do get better,” she noted.

As doctors explained to Holly, there could be varying degrees of GBS.

“They warned me that I could have a severe case and that I would need to learn to walk again. At first, I didn’t believe that my case would be severe. But once I was in ICU and I realized I was not getting better any time soon, I began to question whether I ever would. The doctors said I would get better, but I found it hard to believe.”

The severe impact of this disease shortly after the birth of her first baby was a traumatic experience for Holly.

“It was a tragedy,” Holly noted. “I barely got to know my daughter before my life was taken away. Being in the ICU for 3 months, although she was there with me every day, was devastating. I was angry and depressed for a very long time. But she was my guardian angel. She was the light for our family during such a dark time.”

In total, Holly spent 10 weeks in the ICU, 6 weeks in the neurology ward, and 3 weeks in a rehabilitation hospital. She did get better, but it took a lot of hard work for Holly to regain her physical strength.

“I had to strengthen the muscles in every part of my body,” she recalled. “The first thing I had to do was learn to breathe on my own and get off life support. I spent mere seconds, then minutes, then hours practicing off the ventilator, and it took several weeks of practice to finally be strong enough to come off it. It was the most difficult thing I had ever experienced and it felt like running a marathon every single day.”

Holly said she then worked on lifting her toes and fingers up and down, lifting her arms and legs, and pushing against her therapist’s hands.

“I practiced my fine motor skills by buttoning shirts and opening clothes pins. I strengthened my hands by using putty, and my legs by using a pedal bike at the edge of my hospital bed. Once I was strong enough to get out of bed after 3 months, I did full body workouts and practiced walking every single day to strengthen my legs,” said Holly.

Learning to walk again was a challenge for Holly but “worth the pain.”

“I am fortunate that I made a complete recovery.”

It certainly took a village to help Holly recover and get her back to where she is today.

“Obviously, I thank my daughter Casey, who was my biggest motivation. I also have to thank my mother and ex-husband who were with me every step of the way on my journey. Then the doctors, physiotherapists, respiratory therapists and occupational therapists, who not only helped me reach my goals – they were my cheerleaders and my strength, when I barely had any. I also want to thank my fiancé who is incredibly supportive with my residuals I deal with – from doing laundry and taking care of our three children; he is my rock.”

When Holly was able to finally return home, her daughter, Casey, was 6-months-old.

“At first I was very angry that I was robbed of that time with my daughter, but over time I saw that it only strengthened my love for her,” Holly said. “Going through what I did … It taught me the importance of family. It reminded me to live my life to the fullest and to never take the small things for granted.”

After overcoming GBS, Holly discovered a love of fitness.

“Through my time in rehab, I saw all the benefits that activity had on my body (less aches and pains, more strength, stamina and energy) and I became a fitness fanatic! Going to the gym is a lifestyle for me now, and I am stronger than I ever was before GBS.”

“I wrote my book, started my website, and connected with people all around the world. I want to share my story because I never want anyone going through GBS to feel alone or like they will never get better.”

She also wants to bring more awareness to GBS “and the horror that it is.”

“GBS is not being paralyzed, watching movies all day in a hospital room. It is hell – full of pain, torture, depression, and tears – and I wanted people to know that. I also wanted to share my story to remind people that even in the worst of times, you can get through it, and you can find your strength.”

Holly said that bringing awareness and a face to GBS can make living with the disease less isolating.

“When I was first diagnosed, I was under the impression that GBS was rare and there was no one else out there with it. That was very isolating for me. Then, a nurse brought a GBS survivor in to meet me. Seeing him in person, fully recovered, gave me so much hope and made a huge impact on me. He is the reason why I now visit patients in the hospital,” she noted.

Since her recovery, Holly has connected with thousands of GBS survivors around the world.

“We all share a unique bond and when we meet one another, we have an instant connection! The GBS community is something I am so proud to be a part of.”

Holly cannot stress enough the importance of scientific research in helping to find treatments and cures for neuromuscular diseases, like GBS.

“Research is so important! There is so much that doctors don’t know about the human body. We need to learn more about GBS, why it happens, and ultimately, we need to find a cure! It’s important to fund research for GBS because as a rare disease, it just doesn’t get the same amount of exposure that other diseases get. It may be rare, but when it affects you, it doesn’t feel so rare,” she said.

“It’s also important to know that not everyone makes a full recovery from GBS, so finding better treatments and a cure could help so many people.”

“This was a quote I had taped to my wall in front of my bed in the ICU. I always thought that in order to be strong, you had to be confident, happy, optimistic, and powerful – which I rarely felt in the ICU,” she recalled. “I realized that you don’t have to feel those things to be strong. Barely making it through the hard days is strength. Trying again tomorrow is strength. Strength doesn’t always roar.”

“Things do get better. You just have to keep going and never, ever give up.”

Despite the pain and suffering Holly experienced with GBS, she explained that the positive far outweighed the negative.

“In the end, it showed me my strength and made me a better person. I am grateful for what I went through.”

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